Have you ever been to Billy Beez? If you haven’t, imagine the play space in a McDonald’s (giant slides, ball pit, tunnels, etc.) multiplied by 50 and set in a space the size of a typical Sears, and you’ve got Billy Beez.

I had the pleasure of going to Billy Beez with my sister and her two toddlers recently. Arriving at a little after 11 am, we found the place uncrowded and fairly quiet. Ripping off my shoes and putting up my hair in a half-attempted bun, I joined my sister and nephews as we sprinted into the utopia of a playground in front of us.

Initially, things were going swell. I managed through tunnels and down a cool red slide. And right there is where my good fortune ended.

As we rose higher through the maze of equipment, I discovered certain areas were nearly impassable for someone of my particular neurological makeup.

Through one stretch of walkway, the floor was made of some kind of see-through material.  This was no good. My brain was furious with the idea of walking on a surface that allowed me to see the ground very far below. I tried to remind myself that many people don’t enjoy this either, but that didn’t change the fact that I was the only person in Billy Beez who seemed incapable of walking across this surface. Naturally, I retreated hastily and found another path.

I have made it this far in life by relying on avoidance, and I wasn’t going to quit now, dang it.

Soon enough, Billy Beez began to grow more crowded with families. My nephew – who I call Gilly – and I were about to ascend once more when I noticed we were joined by a girl of about three years old. I looked back but saw no parent or guardian in sight. It was hard enough for me at times to get through this obstacle course, let alone help along a small toddler. Now, we were a party of three, embarking on a new perilous journey for which I was wholly unprepared.

After making it through a series of tunnels and steps, I was pretty full of myself. We’re doing it, I thought, we’re gonna make it.

Elation turned to panic, when out of literally nowhere, two more toddlers decided to join our gang and now I was responsible for what could best be described as the worst fellowship of the ring. They were my Frodo, Sam, Merry, and Pippin, except they were all in diapers, and we were in a playground maze three stories high with no eagles to help us.

Did these two new toddlers have any parents with them? No, of course not.

Letting your small toddler roam through this massive arena alone is borderline neglectful, as it’s too dangerous without constant supervision. If that’s not enough of a reason, our crappy little fellowship soon discovered that 80% of the slides had big signs next to them that read, “AGES 5 AND UP ONLY.”

I had to wonder, did Billy Beez think kids under the age of five could read the sign telling them they are, in fact, too young for the slide? The list of slide warnings was never-ending and alarming:

1. You must be age 5 and up to ride
2. Keep your hands in at all times
3. Lay on your back, feet first only
4. Do not try to stop
5. Immediately move after exiting the slide
6. Say a prayer when you reach the halfway mark
7. Watch your life flash before your eyes

Try leading a group of toddlers to a big fun slide, and then having to tell them that none of them could go down the slide. Nobody in the fellowship liked me at this point, but someone had to keep us alive. I went down one of these monster slides earlier, and it was extremely rough and fast. I couldn’t imagine what it would do to squishy tots, whose bodies are made of the same material as Play-Doh.

I convinced my group of Billy Beez orphans that we should try to make it to the big blue slide I appropriately named, Big Blue. Although it was a big slide, it was much safer for all of us. With their approval, we marched onward until we came to another fork in the road. Well, a fork for me.

All four of the toddlers easily went ahead of me, disappearing up some colorful steps.

“WAIT,” I shouted.

Naturally, nobody listened. It was do-or-die, now-or-never. The fellowship wouldn’t survive without me. One of them would take a wrong turn and lead the rest of them to another tube slide with a warning sign they couldn’t read, and all of them would be doomed. With great shame in my heart, I pulled my body like a freaky inchworm across the side of the floor. Other children behind me stopped and stared at my butt, probably feeling sorry for me in a way that I don’t particularly care for.

Miraculously, I survived. I caught up with the tots who were looming over the edge of Big Blue. Below is a photo of the slide, and as you can see, there’s a tiny baby child unattended. See? I’m not making this stuff up.

Despite its ominous appearance, this slide was much safer than the other tube slides, and there was no age warning. Once we all arrived to the top, a celebration speech was in order.

I joined my hands with their germy, sweaty toddler hands, and as the coolest unit ever, we tackled Big Blue.

And so ends my story. I don’t know what happened to my Billy Beez fellowship. I imagine they could still be there, roaming around on the edge of danger; failing to read warning signs; flying down hazardous slides; spreading measles; attending toddler business conferences; and all the other things toddlers do in places like this.

If you find yourself in a gigantic indoor playground, make sure you don’t have sensory issues that prevent you from properly navigating the playground before you temporarily adopt neglected children and attempt to lead them through that very same playground.

Xo Kelly

This blog story was was written for the STAR Institute for Sensory Processing Disorder as a featured piece during their Sensory Awareness Month campaign in September. This year’s theme was “I Make Sense.” Now, I’m sharing it here for the first time. Cheers!

Here’s a moderately interesting piece of information: of all the adults I know of who’ve been diagnosed with SPD, I am the only one who was diagnosed as a child – in 1996, to be exact. In fact, it used to be called Sensory Integration Disorder. That’s right, there was no “P.”

This has left me in a unique position. I’ve had nearly 20 years to experience my life with SPD fully knowing that I had SPD. (In case you didn’t know, this is not common for adults with SPD.)

Unfortunately for lots of people, they live many – difficult – years not knowing what on Earth is going on with them. They have confusing and embarrassing issues that nobody can explain. Often, other diagnoses are used to account for the wide range of problems, but those diagnoses don’t fit right. It’s like forcing a puzzle piece into the wrong space when you’re desperate to finish the dang thing. You know that particular piece doesn’t work in that spot, but it’s the closest one, and you’re getting tired of figuring out this puzzle. You’re left with a wonky-looking puzzle, and an overwhelming sense of exasperation.

That’s what it’s like to be a sensory person without knowing that you are one.

Instructions Unclear, Please Try Again

As SPD’ers, we tend to spend an outrageous amount of time attempting to make sense of ourselves and our place in a world that doesn’t seem too perceptive regarding our comfort or functionality. We make charts. We make lists. We experiment. We talk and cry and share until we find some solution – any solution – on how to manage living with an atypical neurological makeup.

If only it was that easy! Unfortunately, we aren’t gifted with a set of instructions for how to manage our sensory brains. We are left with the often daunting task of making sense of all that ourselves.

The ease of this task seems akin to climbing Mr. Everest on a cow.

The Sensory Onion

Understanding your sensory self comes in layers (yes, as Shrek said, like an onion). Once you discover one layer of yourself, it leads to things hidden underneath that you wouldn’t have discovered if you hadn’t peeled back that first layer initially.

For instance, you’ve always assumed that you despised getting your hair cut because you don’t do well with small talk, but as it turns out, you’re tactile defensive, and having your hair touched in any manner is distressing to you.

There’s the first layer of the sensory onion. It makes sense that you can do well with small talk in other places, but at the salon or barber, your hair is being touched during conversation. The hair touching is the real problem, not the small talk. Yet, the small talk becomes more difficult because of the hair-touching distress, hence the confusion.

As it usually happens when dealing with onions, there will probably be a lot of tears when you start to peel back the layers.

The realization that your life-long struggles can be traced back to a singular disorder and it has a name and it’s REAL – that’s quite a moment. That’s the kind of moment where Oprah pops out and starts dishing out Volkswagens like some kind of freaky Santa. It’s also a moment where you want to fall to the floor hysterically crying. You are mourning the struggle you or your child has faced. It was long – too long – and you’ve probably developed additional health problems trying to figure out that you had sensory issues all along.

There were most likely too many times to count where thoughts in your head looked like this:

After realizing that your seemingly random issues can all be attributed to one source, it’s liberating. Your perspective of yourself and your life is altered drastically, and when a situation arises, you know it’s probably your SPD at the root of the problem. And once you know that, you can get access to the tools and techniques to solve the problem.

But, it’s not all sunshine and caramel fudge brownies. Some days, you still won’t make sense. But that’s part of the sensory journey. Your sensory onion is gigantic, and you’re still peeling away those layers.  There will be sensory problems that you will continuously have to overcome, and there will be no easy solution. There will be days where nothing makes sense and then, days where everything makes sense, and you’ll feel like you and Moo-lan really did make it to the top of Everest.

If there’s one thing I know for sure, it’s that despite my early diagnosis, I’ve still got a long way to go with peeling away the layers of my sensory onion. But with every layer I get through, the more I realize that all this sensory nonsense can and will make a whole lot of sense.

Xo Kelly

Here’s a crappy story to set the stage: During my seemingly endless school years, I would become unusually distressed if any sort of intensely emotional situation occurred. If there was a lot of happiness, I would cry (but not in a good way). If a teacher was harshly scolding a student in class, I would become extremely upset (and probably cry). It felt as if I was being yelled at, even if I had nothing to do with the situation.  Nobody else seemed bothered by these events, but I couldn’t shake it all day. This was because I was mostly unable to separate myself from emotionally heightened experiences.  To this day I struggle with this problem, and it’s fiercely annoying and embarrassing.

I can walk into a room and absorb all the emotions and energies in that room, to the point of making me sick. Momsy used to jokingly call me “Spongebob” for my unfortunate emotional absorbency problem. “Snapping out of it” or growing thick skin seemed to work little for me. I resented myself deeply for it then, and sometimes I still do.

Loud, sudden noises made me cry, but why did silent, angry people make me cry too? Strangely, I could also appear stoic and distant during these situations. My intense meltdown-like reaction would eventually show up at a later, unfortunate time.

I only recently discovered that I was not alone in this empathy problem. Also, this special feature of mine was not something that could be attributed to Sensory Processing Disorder, rather, to my surprise, was a problem for many people with Asperger’s.

All this led me to the belief that people with autism actually feel the world too much. The outward behaviors are a reflection of the inability to process the emotional world. I came up with this theory back in 2010, then later I read about something similar in Temple Grandin’s book at the time, The Autistic Brain. Basically, Temple Grandin is a mind-reader because she literally stole the theory out of my head. I forgive you Temple, it’s ok. Mostly…

The question we face now is, what’s going on in our awesome but slightly wonky brains that so many people with autism seem to have both no empathy and too much empathy?

There is this consistent, and supremely annoying stereotype of people on the autistm spectrum in regards to their ability to feel empathy. The thing is, most people believe one of the defining traits of people on the spectrum is that they are not capable of experiencing empathy at all.

In a way, this is understandable when you think about the behaviors some autistic people show.

(Yes, I said “autistic people” as well as “people with autism” because we are all mature audiences and we can comprehend that a person who has autism is not defined by their autism, and they are, in fact, a separate person. If you are still bothered by this, then you may want to go to a different blog. Here on Eating Off Plastic, I know people with autism/autistic people don’t really care what language is used, they just want to be treated like a person. Rant over, let’s continue with the important stuff.)

If you were to google symptoms of autism right now, here is what google will show you:

This is a screenshot I took just now. Just underneath this text is a link to WebMD, which is “the most popular source of health information in the US.”

Yes, there are four – count ’em – FOUR bullets on this list. If you click the link, you get a much better, more expansive list of symptoms, but I’d say overall the short list is not only pitiful, but grossly inaccurate.

For any person who is mostly clueless about autism, this list would be a terrible thing for them to come across. If you discovered a manual for a DVD player made in 2002, but you owned a DVD player made in 2015, the manual would be terribly unhelpful. It’s the same sort of premise here.

Let’s review those bullet points:

The first and second ones I don’t have a problem with because those are genuine issues for many autistic people.

It’s with the third one where things starts to get iffy. Yes, it is true that people on the spectrum may struggle with “sharing enjoyment, interests, or achievements with other people” but what that whole thing is kinda saying is, “autistic people don’t give a foof about anyone else.” This third point makes it feel like they are pushing the “weird loners” stereotype, and that bothers me, even if it is sort of true or some.

Moving on to the fourth one, “lack of empathy,” is again pretty much saying, “autistic people don’t give a foof about anyone else.”

So, the question becomes: do people with autism experience empathy? The internet sure doesn’t think so. But I think the internet is wrong. Gasp! It’s time to be hit with a crap-load of facts.

The definition of empathy is: the ability to understand, share, and respond to the feelings of another. 

VERY IMPORTANT POINT #1: Autistic people struggle to understand the feelings of other people; AKA take their perspective.

Right away you can see the problem here. The definition of empathy and point #1 contradict each other.

This ability to understand the perspective of another person is known as Theory of Mind. You may be familiar with the autism experiment of having children watch puppets playing with marbles. One puppet hides the marble then leaves. Another puppet comes on stage and moves the marble to a box. The children are then asked where they think the first puppet will look for the marble.

Children on the spectrum will often assume that even though the first puppet did not see the second puppet move the marble to the box, she will look in the box. These children don’t understand that people around them don’t share their knowledge of the situation.

Children off the spectrum will understand that the first puppet will not know that the marble was moved to the box, even though they know it was moved.

This ability to understand another person’s knowledge and perspective of the world is also known as Cognitive Empathy.

Cognitive Empathy often involves deliberate thinking and processing. When you try to see the world from someone else’s shoes, you have to make a conscious effort to do so.

People on the autism spectrum find Cognitive Empathy difficult, but not impossible. However, there is another kind of empathy….

VERY IMPORTANT POINT #2: Autistic people have too much Emotional Empathy.

The second kind of empathy is known as Emotional Empathy, which involves the ability to feel, sense, and respond to the emotions of others.

When you see someone who is upset, you might feel upset too. This is called having Emotional Empathy. Surprisingly, you may know of some neurotypical people who have more Cognitive Empathy than Emotional Empathy. The opposite seems to be true for people on the spectrum.

Emotional Empathy is primal, unconscious, and automatic. You don’t have much control over this type of empathy. Like how you can’t stop yourself from crying when you see Sarah Mclachlan on the dang tv with the orphaned animals? Yea. That’s normal, and happens because of E.E.

A person with autism may be overwhelmed with emotion upon seeing a loved one get married, but they may struggle to understand why exactly that happiness is occurring around them, or why they should be happy at all. But they feel happiness intensely.

Let’s stop associating the word “autism” with the word “apathy” and start understanding that people on the spectrum are diverse, complex, funny, thoughtful, affectionate, and a million more things.

When you interact with a person on the spectrum, do not doubt for a second that they care deeply about the world around them. The care so much that they are overstimulated, overwhelmed, and do not know how to respond appropriately. (This is especially true for my Aspie friends.) Because of this, they react with anxiety. Anxiety on the spectrum manifests itself through fidgeting, repetitive behavior, and no eye contact. It appears like the person is unfeeling, but in reality, their brain is doing whatever it can to withdraw from the situation because it is too intense.

But wait, what about those fancy Mirror Neurons?

Ah yes, mirror neurons are these cool things in your brain that react when you witness someone performing the same action as yourself; aka mimicking behavior. It was believed that people on the spectrum had “broken mirror neurons” which would explain why they seem so incapable of sharing or mimicking emotion and expressions.

Thankfully, recent research has shown that this is not true. In fact, while autistic people are very much capable of mirroring expressions, the social hardships they face can probably be attributed to feeling overwhelmed by – you guessed it – emotions, so much so that they shutdown or that they  – you guessed it again – do not understand why someone would feel the way they do, and are not motivated to share the social bond of facial expression mimicry. This backs the theory that the autistic brain is challenged by cognitive empathy but not emotional empathy.

Whew, that was a mouthful! I look like a chipmunk right now… (A cute one, though, for the record. Not that I’ve ever seen a non-cute chipmunk. I digress…)

Us highly sophisticated individuals with the advanced prefrontal cortices (that’s the plural form of cortex, just found that out tonight) need to make a brand spankin’ new concept of empathy on the spectrum. We can do so much better than that google search yielding four crappy bullet points. Autism does not and should not correlate with the image of an unfeeling robot who gives no foofs.

To start this movement, I’ve created this nifty graphic for us to spread around like jam on toast.

And that’s where I leave you, quirksters. Some stuff to think about on this fine day.

Please leave a comment below, or share the whole post or one of the graphics above.

xo kelly

Here are some of the references for the research I’ve mentioned in this blog post, for the curious:

https://digest.bps.org.uk/2016/07/25/no-autistic-people-do-not-have-a-broken-mirror-neuron-system-new-evidence/

https://www.thedailybeast.com/a-radical-new-autism-theory

https://www.scientificamerican.com/article/people-with-autism-can-read-emotions-feel-empathy1/

Before you dive in, a quick note. This article was written for the STAR Institute for SPD for Sensory Awareness Month 2017. Sensory anxiety is a topic near and dear to my heart. After it was published, I heard from so many people around the world about how this particular article had really moved them. I was so grateful. I am finally publishing it here on my blog, where it will live forever and evah. 

—————————————————————————————————————————-

Let’s talk about something that nearly every single person with sensory issues has to deal with: ANXIETY.  Gosh! Even the word itself sets me on edge.

For people with Sensory Processing Disorder, anxiety comes as part of the package. It’s the bonus prize that nobody wants.

SPD and Anxiety work together to cause mayhem. They play off each other, and create a spiral effect of symptoms.

Strangely, when we talk about sensory problems, anxiety is rarely part of that conversation. The focus is always on the sensory part of SPD. But I would like to shed some light on the chaos that anxiety can cause when it’s teamed up with SPD, and why it’s different than non-sensory anxiety.

But first, it’s time for a little story. A short tale of my own experience with sensory anxiety to set the stage. The following is the true and slightly uncomfortable reality of my life:

I’ve always been told that the best –  and perhaps only – way to conquer anxiety is to put myself into situations that make me anxious, and to push through it.

(Whatever that means.)

I’ve done this for years.

I’ve done this most recently through college, where every morning before my commute to school, I had to give myself extra time because of anxiety-induced diarrhea and nausea. My agonizing stomach cramps and bathroom visit occurred daily, without fail. (I told you this was going to be an uncomfortable story.) I couldn’t stomach food for hours. But, only on the days when I had school. There are no such things as coincidences in this sensory life.

Once I made it to school, I often had to give myself even more time to find a bathroom and change my shirt, which would’ve been soaked in sweat before my first class even began. I spent the large part of my day feeling enormously dizzy. My face hurt from a clenched jaw and the muscles in my back were sore from tension.

Often, I bought myself a warm drink in an attempt to soothe my trembling body, which was trembling on account of being both anxious and also cold. (Fact: when the body is anxious, blood rushes to the main organs, leaving the extremities feeling cold and/or numb.)

I’d come home at the end of the day and nap for an unreasonable amount of time, like 6 hours. My body was depleted, from what I assumed was sensory overload. One day it occurred to me that I was not only physically and emotionally exhausted from SPD, but also from my anxiety that was caused by my SPD. Then the anxiety and SPD and feeling helpless and feeling hopeless made me seriously depressed.  Would the fun ever end? I wondered.

I went to college for four and a half years. I pushed through my debilitating anxiety every day, and wouldn’t you know it, the last day of college rolled along, and that morning I had diarrhea and a sweat-soaked shirt. Just like the first day.

The End!

I know, I know. It was a truly riveting tale. One that will certainly go down in history as one of the greatest stories known to man. But let’s get back to what matters here. Physical symptoms of anxiety are only one part of the equation.

At the end of the day, I learned that pushing through my anxiety did nothing to help alleviate it. All it did was make me miserable and feel like I was weak for not being able to get rid of my symptoms.

Since that time, I’ve come to realize that the reason traditional methods of alleviating anxiety were not working for me was because I had a very good reason to be anxious. 

Now it’s time to introduce the second part of this equation: Sensory Processing Disorder.

In my case, my SPD has gifted me with overwhelming sensory sensitivity and the inability to function when having to process multiple sensory stimuli. In most environments, like a classroom for example, my body picks up on the sounds, smells, textures, and even the vibe in the air to an outrageous extent. My sensory brain is turned up to the highest setting and it isn’t very good at turning off.

As one can imagine, having SPD is not fun. Anybody who says it is, well, they are a goober. It’s called a disorder for a reason. It’s not called Sensory Processing Fun Times All Around (SPFTAA). Although, I admit that would be a cool thing.

Dear reader who I love so very much even though I’ve never met you,

If you can relate to my gastrointestinal distress in sensory-ugly environments, please take comfort in the fact that what you are feeling both physically and emotionally is very normal. For instance, when the sound of most people’s voices are loud to the point of severe discomfort, being in a place with lots of people talking is going to give you anxiety. It makes sense.

Let’s briefly recap and take a look at the complete equation. Keep in mind, I spent a lot of time making this:

Consider this:

You wouldn’t say to someone, “hey, I know there’s a hungry shark in this swimming pool, and every time you’ve gone in he’s bitten you, BUT you don’t need to be anxious about swimming because if you keep going in, he won’t bite you anymore!”

Yet, we’ve been telling ourselves, “hey self, I know you have SPD, and every time you go into a sensory unfriendly environment it’s super distressing, but you don’t need to be anxious this time because if you keep pushing through it, you won’t have anxiety anymore!”

This concept of pushing through anxiety often works for regular, non-sensory anxiety. Allow me to demonstrate:

When you were five you went to a birthday party. A person waved a bunch of balloons around your face and you FREAKED OUT. Fast forward ten years later, and you have anxiety whenever you see balloons.

To alleviate this kind of anxiety, you start to spend time around balloons. Maybe you go into a room where someone has placed a balloon. Maybe next time, you move a bit closer to it. After that, you touch one. Your balloon-related anxiety slowly improves over time. You are able to push through the anxiety by addressing the irrational thoughts and fears you experience, and replacing them with rational ones. “Balloons aren’t scary. I do not need to feel anxious around them. I am ok.”

**I’d like to note that when I say regular anxiety I do not mean less anxiety. Anxiety from having a neurological condition like SPD is a different kind of anxiety, not more or less severe than anxiety from other things.**

Now let me demonstrate how this concept does not work for sensory anxiety:

When you were six you went to a birthday party. You are sound sensitive, and during the party, kids were popping balloons. It upset you deeply. Fast forward ten years later, and you have anxiety whenever you see balloons.

To alleviate this kind of anxiety, being around balloons will not reduce your anxious feelings because you are still sound sensitive, and balloons could potentially pop at any time. If they pop, it will scare you the same every time.

WHY DOES THIS HAPPEN?

The reason people with sensory problems have recurring, stubborn anxiety is because many SPD’ers lack the ability to habituate (become accustomed to) new information. Our unique sensory systems do not do well with what I refer to as POTENTIAL stimuli. We like routine and predictability. But a lot of sensory stimuli is neither of those things. The world is full of random, unusual and unpredictable things. When you have a brain that struggles to make sense of the predictable – let alone the unpredictable – it’s easy to understand why anxiety is the result.

WHAT DOES SENSORY ANXIETY FEEL LIKE?

When you have anxiety from sensory issues, it presents itself the same way non-sensory anxiety does; the symptoms are virtually the same. It can be hard to distinguish between sensory overload and anxiety. Most commonly, SPD anxiety can look like this:

However, if you notice, the symptoms of sensory anxiety are similar to symptoms of a freeze response. Unless the sensory stimulation or the anxiety reaches a breaking point, people with SPD tend to literally freeze during an anxiety crisis. The meltdown and shutdown occurs after, when they are in a safer space to let it all out. Of course, this doesn’t always happen so nicely, and sometimes you find yourself completely dissociated and about to vomit from a fire drill in the middle of the hallway at school. It’s equal parts inconvenient and embarrassing.

HOW DO I HANDLE SENSORY ANXIETY?

Consider the source! To fix or improve sensory anxiety, you have to learn what sensory-related problems give you anxiety in the first place. You don’t want to keeping jumping into the swimming pool with the shark. Remove that shark before you go swimming!

Here are some of my favorite, tried-and-true methods for relieving anxiety when it’s tied to sensory issues:

1. Make it known: Tell people around you that you have sensory issues. Explain specifically what you struggle with (noise, physical contact, need for fidgeting). When more people are aware of it, the more likely your surroundings will be a sensory-safe space, which will reduce your anxiety. People can’t help you remove the shark from the swimming pool if they don’t know it’s there.
2. Alternatives and Avoidance: I tell people this all the time, and I’m saying it again. It’s very much ok to avoid the anxiety-producing event all together. Perhaps there is another swimming pool without any sharks. Or perhaps you do not have to swim today. It’s very much acceptable to turn down an offer to swim if you know you’ll be bitten by sharks.
3. Gear up: Sometimes, you have to swim with sharks. The best thing to do is to prepare your physical and emotional state for this encounter. Some sensory anxiety can’t be avoided, and when that happens, gear up your sensory self in the ways that work for you. Maybe you need to jump on a trampoline, or use a Wilbarger brush, or use a fidget. Allow yourself time to do what you need to ahead of time.
4. Make time to bounce back: In the event that you did have to swim with a shark, and there was no time to prepare beforehand, it’s necessary to dedicate time and energy to letting your sensory anxiety calm down afterward. Just like preparing beforehand, it’s crucial to give yourself time to bounce back after.

With all that in mind, I must conclude with this: experiencing anxiety from having sensory issues is normal, common, and expected. Don’t beat yourself up about it. Your brain is reacting as any brain would under the circumstances. I know somedays the anxiety can be crippling. Other days, it can seem like it’s on a permanent vacation! Flip flopping like that can be draining and confusing.

Pushing through sensory anxiety won’t work to alleviate it, but that doesn’t mean you should stop pushing the boundaries of your life as a person with sensory issues. You don’t have to go in the shark pool, but it’s probably to your advantage to go up the edge and peek in.

A few months ago, I was working on a new mantra. (The word mantra also sounds fancy and psychologically complex, so it feels cool to think I am working on one). I’m a goober, I know.

With the constant bombardment of social media, news media, and print media – ok, ALL THE MEDIA – telling me the pains of the world, I decided my new mantra would be:

“it could be worse.”

AKA, my own problems and pains are pointless because, well, look at how terribly other people are suffering.

In an attempt to alleviate my personal struggles, I thought it would be helpful to give myself some perspective. For instance:

The list went on, and it could’ve gone on forever. I thought, “if I constantly remind myself of how good things are in other areas of my life, I will simply banish the bad things with my super-positive-mindset-mantra brain power.”

And it worked, for a little while.

I read books about positive thinking. I read articles online about letting go of unpleasant thoughts. I watched videos on how to stop being depressed. I exercised when I felt my depression coming on.  I faked it until I would make it….except I wasn’t making it.

There was a gigantic flaw in my mantra.

I began to feel guilty for feeling upset or concerned about the “bad” in my own life. Or worse, I felt guilty for experiencing the physical symptoms of my own issues, like severe fatigue, for instance.

And so, my mantra began to crumble faster than an old crumb cake.

It occurred to me that while it was important to work towards having a positive perspective on my life, it was equally important not to disregard my own struggles and think of them as minuscule or paltry.

No, I do not have a brain-eating amoeba, but that shouldn’t make my struggle with my sensory processing disorder, or depression, or anxiety, or anything else less valid. It’s OK for me to be concerned about these issues and how they impact my life. They are not “first-world problems.” They are my problems, and they are real.

Yea I know, when I frame it like that, it does sound ridiculous.

Reasons the Mantra failed:

1. Telling myself that other people have it worse did not make my problems go away. Rather, it made me feel worthless, weak and guilty for having them in the first place.
2. It’s not about having a positive outlook, or different perspective on life. I am grateful for the life I was given, I appreciate the good (trust me, I really do). Thinking, “today I will not be anxious or upset by sound because there are people starving to death” did not – believe it or not – make me less anxious or upset by sound. It only made me feel selfish and powerless.
3. It’s not about empathy, because I have cried for people I read about online in another country whom I’ve never met because they are suffering in ways I will probably never know. Did this change how I was able to face my own problems? Not really.
4. In the beginning, my mantra sounded good. However, it would be the same as saying, “there are people who are happier than I am, so I cannot be happy.”
5. I was attempting to control things which I’m literally unable to control most of the time.

What I’ve decided to do instead (and what YOU should do too):

1. Recognize negative thinking patterns and focus my attention elsewhere. Similar to meditation, I am working on taking my negative thoughts or feelings, and letting them pass through me like water; in one side, and out the other. It’s OK for them to stop by, but they aren’t allowed to stay.
2. Identify when my thinking patterns or inner dialogue is irrational – and make it rational.
3. Not beat myself up with old school Catholic guilt for having problems in my life, even if other people technically have more serious problems.
4. Stop stigmatizing my own mental health issues, because I deserve better than that.
5. Try not to be super-duper jealous of the many people who have easier lives than I do (namely, people without neurological dysfunction on multiple levels). Also, continue to be appreciative of what I can do and all the good things my life has afforded me so far.
6. Harry Potter movie binging

Xo Kelly